Living with Thalassemia Video Series

My name is Uzema Jeena, and I have Thalassemia Major.

Because of this condition, I need blood transfusions every three weeks, and have received them for my entire life.

I want to start a conversation with you about living with a chronic illness.

I want to talk about how you can live a full, productive life and not be limited by your illness. Join me here. And don’t forget to visit my YouTube channel to subscribe.

Watch the series trailer now

Of Hospitals Old and New

I don’t know how my mother did it. Holding me, a six month old baby, with the help of a nurse, while yet another nurse tried to find my vein. Restraining me as I let out a blood curdling scream while they started my IV. My dad would drive us to the hospital in the morning and my mom would stay with me all day, while I received my blood. She would have to repeat this again four weeks later, and again four weeks after that, and again, four weeks after that.

My parents married, completely unaware that they both possessed the Thalassemia Minor gene. This meant that each of their children would have a one-in-four chance of ending up with Thalassemia Major. My mother was pregnant four times; two of those pregnancies ended in miscarriage. My sister was born with Thalassemia Minor, and I, with Thalassemia Major. None of this was known until I started to get sick. I was born a healthy, plump, eight pound baby. But soon, I started to become sick and weak.

My parents had been in Canada for only three years at the time. They brought me to several Montreal hospitals, but nobody knew what was wrong with me until I was diagnosed at the Montreal Children’s Hospital. This was the Fall of 1975 and I was six months old.

The Children’s has been my second home since then. And I’ve just said goodbye.

My dad was an airplane engine machinist at Pratt & Whitney. When he had to work the evening shift, my mother would take me to the hospital by Metro, as she didn’t drive. She would spend the day with me. At lunchtime, she would go out to the corner of Atwater and St-Catherine street and buy me McDonald’s as a treat. Dee, my nurse, would always partake of my french fries; she could never resist them because they smelled so good. Later in the day, my mother would buy me Humpty Dumpty barbecue chips from the Tiny Tim café. What a treat!

Last transfusion at the Montreal Children's Hospital

My mother was a stay-at-home mom until I was in Grade 5. At that point, she started working again, as a housekeeper at Hotel du Parc. She would escort me back and forth from home to the hospital, and go to work cleaning rooms while I was getting my transfusion. She followed this exhausting routine until I was 14 or 15.

One day, she let me take the Metro alone to get to the hospital for my transfusion. I was ten years old. I felt so free and happy. I knew exactly where I was going and how to get there — I knew the route to the hospital by heart at that point. When she picked me up from my transfusion that afternoon, on her way home from work, I felt proud. I was learning to take care of myself.

My dad sometimes came to the hospital when he was on overnight shift at Pratt & Whitney, but could never stay in the room when I was having my IV put in. The thought of my pain was too much for him to handle, and he had to wait outside until the transfusion was well under way.

There were a lot of older patients in the transfusion room, mostly teenagers. I shied away from talking to them at first, they were so intimidating and worldly. There were also some younger patients, who I felt were too young to waste my time with. But then I met Amy. She was exactly my age, nine years old at the time, and we instantly became best friends. We would sit on the same bed together and create outfits for our paper dolls while receiving our blood transfusions. We started scheduling our transfusions together, and this made them much more pleasant. My mother and Amy’s mother would take turns watching us. It was a long day. We would get to the hospital around 8:30 a.m., get our IVs put in, get crossmatched with the donor blood, receive the transfusion, and finally leave around 2:30 p.m.

As I got older, I got to know more of the patients. We were always transfused in a large room that had a couple of chairs and one or two beds. I would spend the day laughing and talking with whoever was there. It made the day go much faster and made me feel that I was not so alone. Some days, we were hysterical with laughter, teasing each other and concocting absurd scenarios to pass the time. Some days were more painful than others, and I would sometimes leave the hospital feeling like a human pin cushion, completely crushed.

Nathalie looks for a good vein.

Even now, a day or two before transfusions, I sometimes experience light-headedness and dizziness due to low hemoglobin levels. Other times, I feel perfectly fine. When I was in my mid-twenties, I started experiencing severe bone pain in my hips and back. This was the result of very low pre-transfusion hemoglobin. The pain was debilitating and, in order to counteract it, my hemoglobin needed to be stabilized at a higher level. I then started receiving blood every three weeks instead of four, and I am still on that schedule to this day.

Hooked up to the infusion pump. Each bag takes approximately two hours to infuse.

When I was a teenager, I heard through the grapevine that several of the older Thalassemia patients had died. Eventually, the iron that they received from frequent transfusions would build up on their heart and liver and would cause those organs to stop working. As children, they had been told that they would live to maybe eighteen or twenty years old.

In 1980, when I was five, we were introduced to a new medication: an iron chelator that would remove the excess iron from our bodies. One of the older patients and my nurse came over to our house one evening to show us how to administer this medication. It would be delivered by subcutaneous injection and a slow overnight infusion, powered by a battery-operated pump. The nurse used an orange to demonstrate the correct angle that the needle should be inserted. The medication would be infused over a period of eight hours overnight. This iron chelator changed my life; it meant the difference between an early death and a normal lifespan for me.

The treatment was difficult and painful. We had to use this iron chelator five or six times a week with the infusion pump strapped to our bodies while we slept. Most nights, I would try to put it off for as long as I could. I could tell that my parents hated having to hurt me like that. The needle was painful. And because the injections were almost daily, the injection sites would get swollen and tender. But this is what we needed to do in order to keep me alive, so once again, my parents adhered to the treatment regimen, despite how difficult it was. My mom and dad would take turns putting the needle in my arms, legs and stomach. When I was twelve, I learned how to mix the medication and administer the injection by myself.

I continued these injections until I was 21 years old, when a new iron chelator in pill form came along. I jumped at the chance to try it, and it has given me an unparalleled amount of freedom. I credit my parents for making me understand the importance of following these treatments. Their strength knows no boundaries.

For the teenagers in the group, starting such a cumbersome and painful treatment at a relatively late age was a huge life change and a sudden burden. A lot of patients died, because it was either too late for them to be saved by the medication, or they were not able to cope with such a painful medical regimen. One patient that I knew quite well, decided to let himself die, because he felt that he could no longer continue with the transfusions and chelation therapy. It is a loss that I still see reflected in his parents’ eyes every time I see them.

There are normally between one to five Thalassemia patients transfused at the same time.

Seeing these older patients die had a profound effect on me. I knew firsthand how painful the treatments were. They were extremely difficult to follow, and interfered with a normal life. At the same time, the sobering fact that some simply gave up while others just didn’t respond to treatment made me want to keep fighting because I wanted to live.

Growing up, I had a great many scares at the Children’s Hospital. In 1985, when I was ten years old, we started to hear about AIDS. Some of the patients had contracted HIV through a blood transfusion, and had eventually died. I was petrified. I had heard that HIV could remain undetectable for up to ten years. At every transfusion that I received, I would wonder if I’d be infected next.

A few years later, when I was a teenager in the early 90s, the Hepatitis C scare came along. Quite a few patients had contracted it from blood transfusions, and a few people I know are still fighting to overcome it.

Blood transfusions today are safer than they’ve ever been. Still, there is always that chance, however minute, of infection or a bad reaction. But this treatment, along with proper iron chelation, is the best chance I’ve got. And the benefits of it far outweigh the risks.

I am O positive and receive two units of blood every three weeks.

I know all too well, that were I born a generation earlier, I would not be alive today.

Today, I received my last blood transfusion at the Montreal Children’s Hospital (my subsequent ones will be at the new MUHC super hospital). My first transfusion at the Children’s was received when I was a six month old baby, and I am turning 40 years old this week. As I said, the Children’s was — quite literally — a second home to me. I knew the Home Care unit inside out. The nurses took care of me and became like a second family. The patients that I spent so many hours with helped me to feel that I was not alone. They understood me and the difficulty of the constant pain, the difficult game of balancing life and medical treatment. And through it all, there was humour and friendship.

All photos by Jim Royal.

Whistling in the Dark

You say that I am brave living with a chronic illness, but I must be even braver than you know.

I do not feel the need to believe in life after death or that some force is watching over me. I do not need to believe that everything happens for a reason. I know that everything that happens is random and unplanned and not a punishment or a reward.

I do not feel the need to believe in the fantasy world of chakras, astrology, or the fevered imaginings of Deepak Chopra. I do not believe in heaven or hell, I believe that we choose to make our own lives heaven or hell right here on Earth.

I am also brave for the following reason. I am unable to have children of my own. When others tell me about their children, how wonderful they are, how annoying they are, how proud they are of them and how they have never felt this much love before, I have to live with the knowledge that I will never experience that myself. I will never have that. And this pain is constantly with me, every single day. I have to face this in my everyday life, at community celebrations, at work, on Facebook, from friends, strangers and colleagues. I am so happy for them, but because I’ll never have that, it tears away at me and, to be honest, it fucking HURTS.

But I’m facing it. I don’t have a need to blame any supernatural force for punishing me and not giving me children. I definitely don’t have a need to go to a psychic or a medium for help. I’m not following any superstitions, or going to a homeopath out of desperation. I’m not holding out any false hope.

I’m facing the situation and being honest with myself and trying to move on. After all, I have an amazing husband, family and friends, a wonderful place to live, enough food to eat and enough money to travel. Most vitally, if it were not for advances in science and conventional medicine, I would not even be alive right now. I would have died when I was a teenager. The fact that I am in my 30s right now is nothing short of a miracle (the scientific kind, of course). And that is a hell of a lot more than most people have.

We Are All Made of Stars

After reading my last blog post, one of my best & dearest friends asked me what I thought about the law of attraction and whether that fit into my philosophy.

Here is my answer.

I do believe that thinking positive thoughts, and taking positive actions (having good energy) affects us as individuals, as well as the people around us. However, I don’t believe that the universe is at all aware of us.

Earth is a tiny mote of dust in a vast universe and we are but tiny specks. We have the power to make decisions that have a positive outcome on our lives, but we cannot control the cosmos. 

We have a connection with the universe in the sense that we are an amazing (but minute) part of it; indeed, the ingredients that make up our bodies are the same ingredients that make up the cosmos. Just as we were born and will one day die, the universe was also born, and will one day die. We are a part of it all. As Carl Sagan said “The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of starstuff.”

Likewise, I don’t believe that the universe is at all aware of our thoughts and our actions. I don’t believe that the universe can control the relatively insignificant aspects of our lives…however, I believe that we, as human beings can and do. 

I do not feel bad that the universe is not conscious of my presence. It is enough for me to know that we are a part of the universe and are the lucky ones who actually beat the odds and were born.

We are insignificant compared to the cosmos as a whole, but are significant to those whom we surround ourselves with. The relationships we have with others and the way we treat our fellow humans is most important, I believe. 

That’s what I think.

What I’ve been ruminating about lately…

We are each responsible for our own peace and happiness. I am learning to stop looking for it outside of myself. Bad things and good things happen to everyone, no matter if you are a “bad” person or a “good” person. The universe harbours no favouritism towards any one of us. I take comfort in knowing that every bad thing that happens to me is random, and that the universe is indifferent to me and unaware of my presence.

Of Birthdays & Blood Drives

This summer, I went to a 50th birthday celebration for someone who never expected to live 50 years.

The celebration was for somebody that I have known for decades. His name is George, and just like me, he has Thalassemia. We receive blood transfusions every three to four weeks, and growing up, we would often receive the transfusions together. He was already a teenager when I received my first blood transfusion as a six month old baby.

George’s 50th birthday was a milestone for every single one of us with Thalassemia. You see, George is the oldest of our Thalassemia patient group in Montreal. When he was a teenager, he was told that he would live only into his early twenties, which was a typical lifespan for a Thalassemia patient at that time.

Thalassemia patients receive multiple blood transfusions, and the excess iron received slowly builds up on the heart and liver, ultimately leading to the death of the patient at a young age. But when I was about 5 years old, a drug called an iron chelator was introduced. I was injected with this medication almost every night for 16 years. It saved our lives. Eventually, the chelator became available in pill form, replacing the painful injections.

My generation is the first to actually live a full, normal life with Thalassemia. George’s 50th birthday is a huge deal for us.

It gives us younger patients hope, and confirmation that we, too, can live to George’s age and beyond.

But we can’t do it alone. In Montreal, there are almost 50 people like George and I, living with Thalassemia. Each of us need a blood transfusion every three to four weeks to stay alive. Every transfusion requires two or three units of red blood cells.

We need you.

There will be a blood drive held at the Cité du Multimédia in Montreal at 111 Duke street on October 22nd. Our goal is 65 donations. Please consider being a donor! Call to make an appt at 1-800-343-SANG or just simply show up between 9 a.m. and 3 p.m.

In Memoriam…

I remember how I felt when they told me that I was pregnant. My first reaction was shock. I had been through a year and a half of pure hell: the gut wrenching pain, the rollercoaster of emotions, the bad reactions to the super hormone injections, the tearful taxi rides to the hospital and then back to work as if nothing had happened. My body reacted horribly to the treatments each time, and each time a treatment failed, I swore it would be the last time I tried. I was beyond my breaking point many, many times, at times even suicidal. The added stress of being off my Thalassemia meds and knowing that my iron levels were rising while I continued to receive blood in order to stay alive was enough to make sleepless, tearful nights the norm.

My husband Jim stood by my decision to try for a baby, even though it was painful for him to see me like that. I knew that I would always regret it if I did not try to achieve something that I wanted so badly. I had grown up believing that I could do anything that I wanted to do. And I did. I went to university, I got married, I worked hard at following the medical treatments, sometimes painful and exhausting, that were necessary to keep me alive and healthy.

Of course, living with a chronic illness, Thalassemia Major, makes having children extremely complicated. With the current generation of Thalassemia patients, women are actually living long enough to get married and have children for the first time. This was never the case before, and so this is all new territory. Some women have attempted it and have succeeded, but of course, every person is different, and the level of reproductive tissue damage varies from patient to patient.

Jim kept telling me that it was a miracle that I was even alive, and that he would be thrilled if he could just have me for life. The thought that the medical treatments and potential pregnancy could cause my health to fail, and that he could eventually lose me, terrified him.

I couldn’t even allow myself to hope that any of this would work. I knew it would crush me if it didn’t, and I was trying to prepare myself for the worst. And then, one evening at work last Fall, the nurse called and told me that my blood test was positive. I was pregnant.

Jim and I were shocked. The odds that this would actually work had been so slight. We went out to supper that night and were in such utter disbelief that we mostly just stared at each other, speechless.

I told a few close friends and family the news, and they were thrilled. I was cautious. I was extremely nervous about the upcoming ultrasound, though I told myself that I was probably overreacting, that the biggest hurdle had been overcome. Sometime within that two week waiting period, I actually let myself feel a bit hopeful and excited about what was to come.

At the ultrasound appointment, the technologist bluntly announced to Jim and I that the growth of the embryo had stopped, and so I was given a prescription to induce a miscarriage. We weren’t at all prepared to hear that, and were both shocked at the news. I cried so hard that I could barely see. We saw our doctor afterward and he told us to wait an extra week, just in case.

A week later, the situation was the same. We were then told to wait yet another week. It was like an act of deliberate cruelty. We both felt that we were going to go insane waiting. I scheduled an extra blood transfusion to boost my hemoglobin level, continued on my pregnancy diet, and continued taking the hormones that made me feel physically ill and depressed. I knew there was very little chance that the pregnancy was viable, but even if there was only a 1% chance, I had to do everything that I could.

Finally, after the third ultrasound, we were told that the pregnancy, at two months, was definitely non-viable. I could stop the hormones and wait to have the miscarriage naturally.

I was living a nightmare. One evening at work, my body started hurting all over. I felt extremely sore and weak, and my best friend, who luckily works with me, sent me home in a taxi and I went straight to bed. The miscarriage started the next day and continued for a few days after that. And then it was over.

Except that it isn’t. Six months later, the thought of what could have been still hurts. Six months later, I still love the potential life that could have been our son or our daughter.

To be, to do. Do Be Do Be Do.

I remember the first time I heard the words.

I was in my early twenties, and in Toronto for a conference. My aunt and uncle picked me up downtown after the last day’s sessions. They wanted to take me to Queen’s Park.

It was an ideal Fall day, the air was crisp and clean (as clean as it can get in Toronto) and dry leaves crunched underfoot. The sun shone and warmed our faces as we happily chatted and made our way down a stone path. At one point, we sat at a bench and continued our conversation for a few minutes, after which my uncle and I got up to proceed with our walk. My aunt stayed seated. She looked up at us and said “You two go ahead. I’ll catch up with you later. I want to sit here and just be.”

I was shocked. I had never in my life heard anything like it. To just be? To sit and do nothing? To be idle?

I grew up in a household where things were always buzzing, where there was always something to be done, someone to help, something to be mended. The phone would ring and we would go, go, go. One thing done, and on to the next. If things were not done in time, then other things would be delayed and we couldn’t have that.

The only time I saw my parents rest was at 4 pm when they had tea and biscuits. It’s still part of their routine, now that they are retired. Even then, it’s just a fifteen minute break, and then on to other things.

I find that I am often the same way. There are always a million things to do, and when I’m not doing any of those things, I’m checking my calendar and to do list to make sure that I don’t forget anything. I feel a sense of accomplishment when I get things done. I feel the raw satisfaction of striking an item off my list.

Coming back to that day in the park, the more I thought about what my aunt said, the more fascinated I became. To just be. Such a simple concept, but oh, so luxurious! Was it possible to be at rest and just be happy in the moment, and feel a sense of how rich our lives are and how lucky we are to be here without worrying about what comes next?

I want to sit here and just be. Those words remind me that sometimes, even for a moment, I need to stop doing and remember that life is not a race.

My Hands

wedding_henna_designMy hands create, comfort, arrange, wash, wave, steer, nurture, type, play the zils. They fall into stylistic form when dancing bellydance or indian fusion. They allow me to navigate the Internet, click on what I like, and serve coffee to my friends.

I often fantasize about having hands with no scars.

The veins on my hands are pierced every three weeks so that I can receive blood. These veins have been used since I was six months old and they have been tired for a long time. The surfaces of my hands are scarred as are the veins themselves.

There are days when my veins are impenetrable, when the nurses have to push the needle against my skin so hard and it is so painful that I feel like I am screaming inside. And then there are days when the needle slides in easily, as if my skin is made of butter. There are days where I feel like a human pincushion, where two or three nurses take turns trying to get my vein, and I just want to cry, give up and go home. On other days I laugh and tell the nurses stories even as they start my IV…those are the good days.

Sometimes the needle goes in too deep, puncturing the vein on both sides, and the vein is blown.

When I was a teenager, I realized how ugly the scars on the backs of my hands were and took great pains to hide them. Today, I show my scars to good friends.

My sister always said that I was lucky to have hands like a piano player, long and slender. When I would come home from transfusion, she would love that my hands were so warm. My husband endlessly compliments my hands and says that they are elegant and beautiful. When I come home from transfusion, he asks where the infusion took place and  kisses my sore hands and wrists.

There’s a comfort in using the same veins for every blood transfusion, just as there is a comfort in receiving your transfusions at the same hospital and having the same nurses start your IV. It’s not a pleasant experience, but every bit helps.

I often try to imagine what my hands would look like with no scars, no history, smooth and even. They would be unrecognizable, not my own.